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My 86-year-old grandma has Parkinson's and dementia. Partial hip replacement back in March. Deteriorating since then.


Was constipated from meds: back to hospital for enema.


Dehydrated from enema and not really eating: back to hospital.


ER finds UTI and mentions “failure to thrive”, because she wasn't eating too much. Trouble swallowing begins.


Bags of IV meds: infection cleared. Started eating puree and thickened juice.


She eats, and hydrates, then comes back home.


Eating fine at home on day 1, but day 2 she is mostly unconscious and we can't wake her, and no food intake. Back to hospital she goes.


Bags of IV, and she is back... and eating puree. Blood work is fine. CT fine; no heart attacks or strokes. She is medically OK. Vitals are good.


Dr mentioned palliative care bc this seems to be a pattern: she gets hydrated in the hospital, comes home and gets dehydrated.. so it's back to the hospital. She would come home, eat and drink as she wants.. and then we just let nature takes its course. She is DNR, so he said she likely won't come back to hospital if anything goes wrong. Dr said could be days.. to months.


So we are kinda confused, bc if everything else is “fine” or “good”, why would  we go directly to palliative?


Could it be something else?


When she is alert, she eats.. but I know her drinking has declined.


Can she come home on an IV? Can someone survive on an IV?


I kinda feel like we are giving up on her if we choose this palliative care option.


I still need to get more info, because Dr said her situation is different bc she still eats.


We don't want her to suffer; all this back and forth, poking is too much for her.


We want to make the best decision for her. I know she wouldn’t want to be hooked up to machines, so would an IV kinda be the same thing?


Any suggestions/advice of questions to ask?


Thanks in advance.

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Quality of Life is what I have considered for my mother, who is 94, blind, immobile, and unable to initiate communication or requests. She has now been on hospice for 22 months. She is fading, albeit slowly. Comfort is all that matters. Extending life on this plane of existence is of no interest.

I suggest considering where quality of life fits in with your grandma's value system. Does extending life in this incarnation take precedence over the quality of life. For some people it does. For other's it is the opposite. Once you have considered this, then you will know better how to address her situation.
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SaraSara May 2022
Thank you for your reply.
I agree wholeheartedly.
We would prefer grandma to be
comfort and to go in peace, whenever that it.
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It takes a very long time for elders to come out of a surgery situation and it does often cause further memory loss, perhaps permanently, but it's certainly possible she will come back a bit. Do you think some of the problem is that she is not understanding how to take the liquids? I think the suggestions here for food and liquid intake are good. She may soon start handling the water better, but until then if she can drink say some watered down protein milk shake with a straw, try that. She may need reminding how to suck with the straw or sippy cup. While we think the sweets are not good for people, it is sometimes the only remaining taste toward the end, so that is all she might recognize as food for some time. Is she still able to tell you what she wants? I would think also that the back and forth from home to hospital might cause her further confusion and set backs. I wonder if she could stay in one place.
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Go back to your speech and language therapist and ask for practical guidance on hydration. Thickened fluids can still be given in reasonable quantities, and the therapist should be able to advise on what modified equipment would be best for your grandmother.

For examples, try https://www.parkinsons.org.uk/information-and-support/equipment-eating-and-drinking
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I can’t imagine getting enough liquid by the spoonful. How many spoonfuls in half a litre? Not criticising the caregiver, but I can imagine that doing this by the spoonful for the hours it would take, could get very difficult and tedious. And dealing with a refusal would be confusing.

Is grandmother propped up while she tries to swallow? Swallowing lying down is a different set of muscles from swallowing propped up when gravity is working to help.

If she requires permanent hydration with a tube, it would seem to be a ‘close to the end’ situation, no matter what they say.
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Countrymouse Apr 2022
100. You'd be there all day.
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I am confused.
You say she has a 24 hour caregiver. But you say that she has not spent much time with her to monitor.
Your grandma's fluid intake should be monitored.
Thickening liquids and pureeing solid foods should be done.
And offering thickened fluids, and soft foods like puddings, pureed fruits should be a constant.
If grandma has a tendency to "choke" or aspirate then avoid things like jello, gelatin as those will liquify rapidly once they get into the mouth.

If monitoring and increasing her fluids then this routine of dehydration, hospital, "recovery", back home to dehydrate again will continue. And at that pint the doctors will probably recommend Hospice rather than Palliative Care.
At some point there is a time when the body has had enough and the "failure to thrive" becomes an End of Life transition. There is not much one can do when that point has been reached. We all have a time when enough is enough. While family finds it hard to accept the person that is dying is generally at peace. As your grandma declines and eats less, drinks less it is best not to force her to eat or drink. As there is decreased activity the need for calories decreases.
Offering is good but not forcing. If the body is not processing liquids even IV's can be a problem as there is no place for the excess fluids to go so edema can become a problem.
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SaraSara Apr 2022
Thank you so much for your reply.

She has 24hr care prior to breaking her hip, which is when this all started. In the last month, she has only been home a few days. Visitors aren’t really allowed in hospital, but after a few arguments, we were able to have the caregiver there to help, as the Nurses are not helpful. My grandma doesnt have the cognitive capacity to ring the buzzer to have her diaper changed.

The initial days home with the caregiver were fine, eating and drinking. Each time she goes to the ER, the eating process has to start again. Ugh.
But I will ensure to monitor better.

we completely understand that this may be the end, and have made peace with it. So we want to do whats best for Grandma.
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She is being given liquids by *spoon*?

I shouldn't think they were doing that in hospital, even once she was off the IV but before she was discharged. What's the problem with drinking?
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SaraSara Apr 2022
She has trouble swallowing. SLP consult put her on puree foods and liquids that are a honey consistency.
its all spoon fed to her
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This is definitely a discussion to have with your elder after you yourself understand all of the ups and downs and all of the benefits and drawbacks of palliative care. This is a decision for your elder, or for the POA who understands the elder to have with the MD who serves this person.
Do research and discuss, then discuss with the MD. Neither Parkinson's nor Dementia is end of life diagnosis. But adding age, other infirmities, other difficulties and overall quality of life in the equation of this PARTICULAR elder may make Palliative the right care. Ask for a Palliative care consult so you can discuss what it all means.
Do try to remember that "giving up" is quite different from "recognizing that someone has lived a long life and is approaching the end of it". That knowledge doesn't specify years left, but it does mean that it is time to consider comfort and quality of life over length of life, and going on and on and on to no end and with great torment.
I am so glad you have a meeting on Monday to explain what palliative care is, because I think you don't understand it fully. You can, in the meantime, easily research online what exactly palliative care is.
I surely do wish you all the best in this decision.
I wish you the best of luck.
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SaraSara Apr 2022
Thank you very much.
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Why would she starve to death?
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SaraSara Apr 2022
The whole palliative process hasn’t really been explained to us.
We have a meeting on Monday.
was researching last night when I found this group.
After reading other’s posts, im realizing that, there is a lot more to it, and we need to ask more questions so we understand what it will look like, and what will happen along the way.
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Going back and forth to the hospital is a sure sign that the end is near. Those moments of apparent improvement are deceiving. The don't mean that the problem is over. Many times, moments before passing, the patient will show a remarkable recovery. Don't look for any logical explanation, there isn't any.
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SaraSara Apr 2022
Hi TCamp,

Thanks for the reply.
we understand that her time may be up, but since the multiple Drs have told is different information, we want to ensure we are trying everything.
So it doesn’t feel like we are just giving up and letting her starve to death.
Everything else is “normal”, her organs are not failing, and we want to give her another chance.
its really only been one instance when she was unconscious.
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What is being done to support your grandmother with food and fluids at home?

For example:
monitoring her fluid intake
encouraging frequent, small drinks
using sippy cups, straws
choice of drinks + water
juicy foods - soft canned fruit, soups, milkshakes, salads, jello, etc.

Is somebody with her all the time?

It isn't really that long since her hip replacement, and it is a big operation to get over. Certainly too soon to give up! - but palliative care doesn't mean letting her turn her face to the wall, it just means taking certain strenuous and invasive measures off the treatment menu after discussion.

How is she in herself? Happy enough? Do you have any concerns about how she is taking all this?
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SaraSara Apr 2022
Hi Countrymouse,
thank you so much for replying, your reply helped a lot.

She has a full-time 24hr caregiver who feeds her.
grandma cant drink out of a cup/sippy/straw so she is fed liquids with a spoon.
She hasnt really spent enough time at home to monitor.

Her dementia got significantly worse after surgery, but most of the time she recognizes family.
last week I thought she wasnt going to make it, so I asked her about a feeding tube/breathing tube and she said no. My Mom has power of attorney (i think its called advance directive in the US) and said Grandma made it clear that she doesn’t want life support.

we are making plans to bring her home and I will be making her food
to eat, and I plan on getting her other liquids to drink, like Gatorade.
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Sara, we got to this point with my mom. Who had dementia post stroke and lived in a Nursing home.

What I saw was that each hospitalization set her back a bit more and she never regained her baseline. So we said "no more hospital trips--what they can fix at the NH, all well and good. If not, let it be."

You are in a different situation, because she's at home. Is there anything you can do to increase her hydration? Soup? ices? Protein shakes? Watermelon?

Palliative care isn't "giving up". It's letting things be.
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SaraSara Apr 2022
Hi BarbBrooklyn,

thank you for replying. Glad to hear that there are other options, and that this isnt the end.. yet.

ive taken time off to help out, so I plan on making a schedule for the caregiver so we can monitor food and hydration.
she has been eating all her puree
food.. its just the liquids.
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Thanks Peggy.

We are actually located in Canada, so we dont have Medicare.
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What the hospital is telling you is that they can do nothing but correct the immediate issue. If she is hooked up to an iv or a feeding tube, the establishment is increasingly putting that on the family to deal with exclusively, or they’ll send her to an snf that’ll only get paid by Medicare to deal with maybe that one issue while sticking you with the bill for everything else.
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